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Brian Wolf Male Broadview Heights OH United States: Favorite

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Duchenne Parents

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About my family:: 3 kids, Jack is the oldest, Mark is second and Amanda is the youngest

Name(s) of child(ren)/individual(s) with Duchenne:: Jack Wolf

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: Broadview Heights, OH

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St. Patrick's parade

Posted on March 15, 2009 at 11:53am 2 Comments 0 Favorites

We're marching with the Cleveland Fire Pipe & Drum corp inthe Cleveland St. Patrick's day parade:

http://www.clevelandfirepipers.com/stpatricksday.html

It is supposed to be awesome weatherwise! We're all excited!

Brian

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At 9:04am on April 2, 2009, Valarie Ellis said…: Hi there! Thanks for the heads up!! I completely forgot about updating my profile...I know you're always there to keep me on the up and up!! lol We haven't gotten the softball schedule yet....I'm thinking it's in May some time. It's gonna be in the high 60's today.....I am SO ready for summer!!!

At 10:24pm on February 5, 2009, Angela said…: We would love to see ya' if you are in town!!! Keep in touch!!!
Where did they move too?
:~)
Ang :)

At 5:11pm on September 21, 2008, Tony and Jen Dumm said…: hey guys - i forgot to tell you - OHIO STATE is recruiting DMD boys for a trial - Owen does not qualify because he has 49 and 50 deletion - it is the 50 that knocked him out - Call Dr. Friedman if you want to see if Jack can participate ... mini dystrophin injections - that isall i know

At 7:43pm on September 15, 2008, Tina said…: Hi Brian
I watched the video. Thanks for sharing. How old is your son? Our son is 71/2 years old. He has the same deletions as your son.

At 3:20pm on September 3, 2008, Melissa Yurik said…: Sorry we missed you. We are in Cincinnati for Michael's PTC checkup.

Hope to see you soon!!

At 4:21am on September 2, 2008, Lauren M Fritz said…: Hi Brian,
My name is Lauren and my family lives in PA. In browsing the website, I saw that your son has the same deletions as our boys. We learned this summer that both Jake(age 5) and Ryan (age 21 mths) have Duchenne. Does your son take steroids? Jake has always had some trouble climbing, and cannot jump, but otherwise does ok so far. Looks like you have a great family there - take care!

At 3:42pm on September 1, 2008, Amanda Rudd said…: I seen you and your little boy on the telethon today. You are very strong and I commend you and your family for all of the help and support you give to everyone. I am still new at this so I hope to get as actively involved as you are. Do you know much about PCT 124...Cade has a duplication of 45 so I dont think that this will help him, however it does sound promising...I will be callin probably this week to see about coming to a support group...

At 9:15am on August 27, 2008, Amanda Rudd said…: Hello!! Thank you so much for the invite, I will be contacting you very soon!!

At 3:05pm on August 26, 2008, Valarie Ellis said…: I'm your friend now...

At 4:05pm on August 25, 2008, Polly Sundeen said…: Hi Brian - Jack is the 3rd that I know of now (including Cole) with a deletion of 46-47. Cole just turned 9 on 8/3 and we are in the process of getting him a scooter too. He's had a manual chair for 1 1/2 yrs and doesn't really use it that much - mostly when we go to the zoo or something like that. We tried the 3-wheel scooters and I could just invision what you described Jack doing - so we are going to be getting one with 4-wheels. I figure I have enough gray hair already!

So how far is Broadview Heights from Cincinnati? Does Jack see Dr. Wong @ CCHMC? We'll be there for our annual visit the week of 11/10.